Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

Diet When First Going gluten-free For A Very Sensitive To Cc Child


Mom2-2girls

Recommended Posts

Mom2-2girls Rookie

My daughter has been gluten-free after being diagnosed with Celiac in early October. Not sure if it matters but her Marsh score was 3B. Anyways after a HORRIBLE first month with really bad withdrawal symptoms we have seen big improvements. However it seems like she is really sensitive to CC. Our whole home is not gluten-free and we got rid of a lot of things (like the toaster etc). She goes to my mom's once a week for dinner and my mom is super vigilant. At daycare (2 times a week) she only has rice and her own snacks.

She keeps getting tummy aches and having gluten-tantrums. It is so obvious when she is glutened. The thing is I feel that we are SO careful yet this still happens at least once a week.

Does anyone have suggestions? Is there a super safe diet we should be following for a while?

Any input would be much appreciated.

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

Since you are just starting out, it might just take some time. It can also take some time to learn all the ins and outs of the diet. In a shared household there are precautions that you can take with separate counters, toasters, certain dishes like colanders, etc. How careful are other family members about gluten crumbs? We tried everything for a year and then we decided that we had to have a gluten free household. It will depend on your daughter's level of sensitivity. It may be to soon to know yet. Healing can take awhile too.

My son and I are both in the super sensitive category. We also had to go with mainly whole foods diet. It is easier to avoid possible cc that way. Good luck to you. I remember those gluten tantrums!

Link to comment
Share on other sites
Mom2-2girls Rookie

Since you are just starting out, it might just take some time. It can also take some time to learn all the ins and outs of the diet. In a shared household there are precautions that you can take with separate counters, toasters, certain dishes like colanders, etc. How careful are other family members about gluten crumbs? We tried everything for a year and then we decided that we had to have a gluten free household. It will depend on your daughter's level of sensitivity. It may be to soon to know yet. Healing can take awhile too.

My son and I are both in the super sensitive category. We also had to go with mainly whole foods diet. It is easier to avoid possible cc that way. Good luck to you. I remember those gluten tantrums!

Thanks for the reply. Our whole house is gluten-free. My mom's is not nor is the daycare providers since no one has celiac in those families. I know my mom is super vigilant and the daycare provider is careful too, but maybe my daughter is just that sensitive...

I think we will put her on a whole foods diet (we already mostly eat whole foods but could step it up) and not let her eat anything from other peoples homes for a while.

Link to comment
Share on other sites
GFinDC Veteran

Packing her lunch for visits to daycare or mom's seems like a good idea. At least for a while to see if it makes a difference. I think it is good to review everything she is eating once in a while too. Ingredients on any processed foods, vitamins, drinks etc can change, so it is not a bad idea to review them every once in awhile. Actually every time they are bought is best. Whole foods are definitely a good idea while she is early in the healing process, say the first 6 months or so. I saw you were eliminating sugary cereals. How about dairy? Have you tried giving her almond milk or rice milk instead of cow milk? I don't think soy milk is s good alternative myself. But rice, almond, coconut, and hemp milks are ok.

Link to comment
Share on other sites
GretaJane Newbie

There is gluten-free, and there is celiac gluten-free. Gluten-free is not enough for my celiac son. CC is everywhere. Things labeled gluten-free are often mostly gluten-free, there are no regulations yet on what gluten-free means. Recently I ordered a bottle of "Gluten-Free" teriyaki sauce, and once it arrived I looked at the whole label and on one side it indeed say gluten free, while on the back under allergen warnings it said contains WHEAT! Also wheat was listed in the ingredients.

Some celiacs can't tolerate even gluten-free oats. Some can't tolerate corn, because the corn gluten is so much like the wheat gluten. Open Original Shared Link

Some people also have sensitivities to other foods that prevent healing.

It takes a long time to learn all the hidden sources of gluten and all the cross contamination issues (drying hands on contaminated dish towels; using utensils with porous surfaces that have previously been used for gluten; baking with flour can leave it everywhere in the air and on surfaces that kids touch and then put fingers into mouth or eat without washing with gluten-free soap and water.)

Good luck and keep reading everything!

I have been doing this for a few years and still make mistakes.

Link to comment
Share on other sites
Takala Enthusiast

The best thing to do here is that you list out what the kid eats ever day at every meal, breakfast, lunch, dinners, snacks, and we then go through it and see where the holes are.

Link to comment
Share on other sites
Cara in Boston Enthusiast

My son only eats food that either I prepare (in our 99% gluten free kitchen) or that is pre-packaged and labeled gluten free. He doesn't even eat any foods that are "prepared in a facility that processes wheat". At first it was a pain, now it is just second nature. I invested in some fantastic food storage containers and bento boxes and he just takes his food with him. School, playdates, field trips, swim meets, etc. We only eat out if the place is a special, gluten free establishment.

At home, the two "gluten eaters" have a specific area where they make sandwiches (with regular bread) on trays that catch all the crumbs. If they eat gluten cereal, they use special RED bowls so I know not to wash them with our regular gluten-free kitchen sponge. Other than that, there is no gluten in our house. I don't cook with it at all.

Our extended family is always trying to include us by making special recipes. They try hard and mean well. It took over a year for them to finally understand that he simply cannot eat things that are prepared in a regular kitchen. It is just easier for me to pack it. Better safe than sorry.

Cara

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,161
    • Most Online (within 30 mins)
      7,748

    Nehad
    Newest Member
    Nehad
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...